Nutritional Aspects of Rett Syndrome - Full Text View

Sponsors and Collaborators:	Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Baylor College of Medicine
Information provided by:	Office of Rare Diseases (ORD)
ClinicalTrials.gov Identifier:	NCT00004656

Purpose

OBJECTIVES: I. Determine dietary macronutrient intake in children with Rett syndrome and in healthy controls.

II. Measure sleeping and awake metabolic rates in various positions, i.e., reclining, sitting, and standing, by whole-room indirect calorimetry and isotope dilution.

III. Quantify activity patterns by time-motion studies using 24-hour activity records and 12-hour videotaping.

IV. Correlate 24-hour activity patterns with 24-hour heart rate telemetry and short-term oxygen consumption.

V. Estimate 24-hour fecal and urinary energy losses. VI. Determine body composition by clinical anthropometry, whole-body potassium counting, and total-body electrical conductance.

VII. Calculate apparent energy needs based on measurement of energy intake and expenditure.

Condition	Intervention
Rett Syndrome	Procedure: Metabolic assessment with body composition evaluation

Genetics Home Reference related topics: familial encephalopathy with neuroserpin inclusion bodies L1 syndrome Rett syndrome

MedlinePlus related topics: Rett Syndrome

U.S. FDA Resources

Study Type:	Interventional
Study Design:	Diagnostic

Further study details as provided by Office of Rare Diseases (ORD):

Study Start Date:

May 1993

Detailed Description:

PROTOCOL OUTLINE:

All participants undergo extensive nutritional and metabolic assessment with body composition evaluation. Studies include macronutrient intake, body fat, lean muscle mass, metabolic rate, and time-action studies; and 24-hour cardiac telemetry. Rett syndrome girls also receive a hemogram and hand x-ray.

Eligibility

Ages Eligible for Study:	5 Years to 18 Years
Genders Eligible for Study:	Female
Accepts Healthy Volunteers:	Yes

Criteria

PROTOCOL ENTRY CRITERIA:

Patients aged 5 to 18 with Rett syndrome Able to sleep and awaken alone

Contacts and Locations

Please refer to this study by its ClinicalTrials.gov identifier: NCT00004656

Sponsors and Collaborators

Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Baylor College of Medicine

Investigators

Study Chair:

Kathleen J. Motil

Baylor College of Medicine

More Information

Study ID Numbers:	199/11814, BCM-CNRC-H1637
Study First Received:	February 24, 2000
Last Updated:	June 23, 2005
ClinicalTrials.gov Identifier:	NCT00004656
Health Authority:	United States: Federal Government

Keywords provided by Office of Rare Diseases (ORD):

Rett syndrome
neurologic and psychiatric disorders
rare disease

Study placed in the following topic categories:

Developmental Disabilities
Rett syndrome
Rare Diseases
Neurodegenerative Diseases
Mental Retardation
Child Development Disorders, Pervasive
Rett Syndrome

Heredodegenerative Disorders, Nervous System
Genetic Diseases, Inborn
Mental Disorders
Mental Disorders Diagnosed in Childhood
Genetic Diseases, X-Linked
Neurologic Manifestations
Neurobehavioral Manifestations

Additional relevant MeSH terms:

Pathologic Processes
Disease
Syndrome
Nervous System Diseases
Mental Retardation, X-Linked

ClinicalTrials.gov processed this record on January 16, 2009